today (by Judy)

Today I am grateful. Today I am blessed. Today I cry tears of joy, of emotion, instead of tears of sorrow, fear, and anger. Today (as with all days) I appreciate my family and friends, everyone who loves me and who I love. Today I am so incredibly blessed.

Today I had an appointment with my oncologist, Dr. Funky Glasses (Dr. FG) who told me: 1. my cancer tumor markers have gone down, and even though they’re not a definitive for how I’m responding to the chemo, I was happy to hear that; 2. that I can probably live “many years” with my type of cancer, that her plan is for me to live many years; 3. that I’ll have a CT scan on Feb. 7 to get a real picture of how I’m responding to the chemo; and, 4. that there are many treatments for my kind of cancer and many more will come as time goes on.

Today. Today I thank God for my life. Today I love my life again. Today I’m encouraged, boosted, happy.

Today I know, as I do all days, that there’s no cure for what I have, that I will probably die from this. Yet today, it’s OK. Today, if I can have “many years,” it’s very OK, more than OK. Today, I accept it.

Today Absent Minded Professor squeezed my hand when Dr. FG told us that my cancer tumor markers had gone down. Today I had an honest conversation with Energy Boy in which I told him the good news. Today, I heard him respond, “YAY!” Today, I also told him that there aren’t any guarantees and that I might get sick again, but that the important thing is that Dr. FG said “many years.”

Today I didn’t ask Dr. FG to define “many years.” Today, and in the future, I’ll use my own definition of “many years.” Today is mine.

Today I thank God for my life, for this good news, for all my blessings.

Today is all I have right now, and today is a wonderful thing.

_______________________________

Cross-posted to Just Enjoy Him.

Letter to my January 25, 2008 self (throwslikeagirl)

Dear Nicole,

I know it’s been an exhausting time.  After two weeks of doctors appointments, biopsies, mammograms and several assurances that it couldn’t be cancer, your doctor is going to call, on a Friday night, and tell you that it is.  Cancer.  You are going to calmly hang up the phone, start to hyperventilate, leave the children with your friend and get in the car and drive to your inlaws.  In retrospect, driving was probably not the best plan, but it happened so we’ll leave it at that.  And the inlaws were comforting, so since you didn’t get in an accident on the way there, it was probably a good place to go.

I know what you are thinking.  The possibility of death is stifling and it’s so hard to imagine a time when you won’t be cancer mama.

But here’s the thing; life will go on.  It will bring you the people you need, when you need them.  There will be people to help you with treatment.  People to help you with the family.  People to help you with your spirit.  And they will come from everywhere.  Close to home and across the internet.

You will feel like crap.  And then you won’t.

The hair will go.  And come back.

Reconstruction will be a pain in the butt.  Ask me in 2012 if it was all worth it.

You will have friends who move on with their life.  You will have friends recur.  And you will have friends who die.  And this is hard.  But it’s not your fault.  Some people will respond to treatment and some won’t, but there’s no rule that says just because you’re fine someone else has to not be.  There’s no bell curve for cancer.  So no wallowing in survivor’s guilt.  It doesn’t help them or you.

So…

Knit some hats.

Share your gifts with others.

Sing.

And heal yourself.

Love,

Nicole

“how are you?” (by Judy)

“I’m OK,” I respond, not wanting to talk about what’s really going on. What would I say?

“My body is being attacked by some errant cells that are trying to kill it. The only way to treat it is to let poison be pumped into my body. I’m scared. I have to live for my family, especially my son, but there are no guarantees in this.”

I say nothing of the sort. I say I’m OK and I smile and ask how they are. I’m thankful when they take my lead and don’t ask about the cancer, the recurrence. It may be my imagination, but it seems like some are more tentative with me this time which is fine. So far there hasn’t been the boldness of “what’s your prognosis?” like there was the first time when I always danced around the question and never actually answered it because the prognosis my oncologist initially gave me was/is too heartbreaking for me to tell.

I know people notice my scarves, and I’m pretty sure they know what they mean, but I’m glad they don’t broach the subject. It’s easier for me to ignore it with most people except for a very few. It’s nothing personal against anyone. But I’m emotional these days and I don’t want to spend my days — especially my workdays — breaking down time and again.

It’s easier for me to talk and ignore it this time around. I don’t feel the need to tell people about my treatment, my feelings about this (royally pissed), or anything, really. That way I save myself the trouble of hearing incredibly well-intentioned but wearying platitudes. I don’t have to hear how having a positive attitude is the most important thing while I wonder to myself silently, “Does that mean that if I die, it will be my fault?”

A friend I was in a cancer support group with picked Energy Boy and I up from the airport Tuesday. On the way home EB said, “you said if it came back, it would be a long time before it did.” “I did say that, didn’t I?, I asked him. “I’m sorry, EB; I was wrong.”

My heart broke a little for my still-young son. And for me.

How am I? I’m OK . . . for someone with my condition, my disease.

“OK” really means that sometimes I want to hide from the world. That I don’t want to say much. That I wish I didn’t have to work through this, but that I have no choice. That I’m scared and angry. That I’m struggling. That I just can’t tell people how I really am because even if it’s physically noticeable that I’m sick, I sometimes just want to ignore it.

So I’m . . . well, not fine; not really. I’m OK, just OK, and that is often as good as it gets . . . but let’s not talk about that.
________________________________________________________

Cross-posted to Just Enjoy Him.

Need Help Buying Lymphedema Sleeves?

Are you or do you know a breast cancer survivor?  Please read today’s post and pass it on.  If you can’t afford to purchase a lymphedema sleeve, gauntlet, and/or glove, and you can’t manage your post-mastectomy swelling, Crickett’s Answer and LympheDIVAs want to help.

Today, I am pleased to announce a NEW opportunity for breast cancer survivors who have had a mastectomy and/or axillary dissection of the lymph nodes due to breast cancer and have swelling of one or both arms but cannot afford the $200-$500+ cost for two sets of the compression sleeves and gauntlets that survivors with lymphedema must wear every day to keep the swelling in check. 

Although lymphedema sleeves are medically necessary, they are not covered by Medicare OR most insurance plans under current law, and thousands of survivors go without the sleeves, needlessly suffering congestion, swelling, and pain that interferes with their normal activities.

Crickett’s Answer, a 501(c)3 nonprofit organization founded in memory of Crickett Julius, has just joined forces with LympheDIVAs to help other breast cancer survivors who fight not just the beast that is breast cancer but also the fallout of side effects that includes lymphedema, which may limit survivors’ activities.  By working together, they are now able to provide needed lymphedema sleeves and gauntlets to women who need them but cannot afford them out-of-pocket or convince their insurance companies to pay for them.  They do this in honor and memory of their loved ones.

Crickett Julius survived breast cancer only four months, but her mother and cousin are dedicated to helping other women enjoy their life post-diagnosis through Crickett’s Answer, a 501(c)3 organization that provides wigs, mastectomy products, oncology/mastectomy/ lymphedema massage, facials, and other pampering services as a way to help women feel feminine and beautiful after losing their hair and/or breasts.

LympheDIVAs was founded by Rachel Troxell and Robin Miller, friends and breast cancer survivors who wanted to create a more elegant and comfortable compression sleeve.  Rachel continued to build the company during her later recurrence.  Even though she died two years ago, at the age of 37, her father, mother, and brother continue to grow the company in her honor and in the hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong, and confident as Rachel was.

To ask for help, please download and complete the forms at Crickett’s Answer, writing in “lymphedema sleeve and gauntlet” on page 2 of the application. 

To help someone else, please copy and paste this post on your blog or email it to a friend (or your local cancer center!).

To donate, go here. 

To help change the law so that this medical garment is covered by cancer survivors’ insurance, stay tuned for more about the Lymphedema Treatment Act when it is reintroduced in the 2011 Congress.

Because of these women, these three thirty-something women who didn’t ask to get breast cancer, and the men and women who love them, there is now help for women who can’t afford lymphedema sleeves, a medically necessary garment not typically covered by insurance.  Their legacy lives on.

Note: Cancer patients who are members of the National Lymphedema Network and who are treated by an NLN therapist can also apply to the NLN garment fund, set up in honor of Marilyn Westerbrook. 

A new Year a New Hair Do

After getting my hair cut really short on The Wednesday before Christmas my hair continued to fall out after my chemo on Thursday. The day after Christmas I decided it was time and I shave it all off. It came out so easily I barely had to even touch it with my razor. So I’m bald again. I never thought I would be here again. I even gave away all my scarves a year or so ago, thinking I would never need them again. I gave them too a friend in my support group. Everyone came through and I have lots of new scarves and hats and got my old ones back. I am all stocked up. It’s a bit colder being bald in the winter, wooo! So no more flying under the radar, now I look like I have cancer. I was really enjoying my hair and not looking like I was doing chemotherapy. It was nice I felt like I was incognito. Mow not so much, we went shopping at the mall the day after I shaved my head and I got stares and smiles, people being nice to me just because I have a scarf on my head. That is something I never get used to. I tied my wig on the other day and I still hate it. It’s itchy and ugly and I just don’t like  it. If I do get a new wig I am going long and bright! It’s hard to get used to being bald again, I see myself in the mirror and I don’t recognize myself. Today was my first day back to my regular routine, picking the kids up at school. I waited until the last-minute to get out of the car, not wanting to talk about it and avoiding all the Mommies. I felt guilty about it afterwords. They all think I am so strong but I don’t feel that way inside. I feel like a sacred little girl not wanting to be noticed and be different from everyone else. I guess that doesn’t change as we get older. We just don’t realize it until something happens.

Cancer is not just something that happens to your body but it really effects your mind as well. I lay in bed and wonder about all kinds of things. About my girls and how they are taking my second battle with cancer. I worry about my husband and all the extra things he has to worry about. I worry about my parents and them worrying about their child with cancer. I worry about my siblings, and how they handle it. I worry about everything at 3:00 in the morning. Every night before bed I pray that I sleep. That I will not wake up in the middle of the night and not be able to turn off my brain. It’s hard having cancer, going through treatment. I never imagined in a million years that I would be doing this all again for a second time. The stakes are higher this time and it scares the crap out of me.